Where does my limited energy go?

Like most with an invisible chronic illness, this is difficult enough to figure out on our own, let alone have to explain it to someone who has no clue. For a long time, even before my diagnosis, I wondered why some days I could do it all and other days I could do nothing; not even get out of bed. I could never figure out a rhyme or reason to any of it. The most baffling were the days that I maybe did two seemingly easy activities, such as shower and go grocery shopping, and I would be EXHAUSTED! Being told, "Come on! Get moving! The day isn't even half over.", would only make me feel worse. And though I knew something was wrong with me, as did those around me, no one could tell me what it really was. Without a name, I didn't know how to treat it or how long before I could find the cure or antidote.

But even after finally being diagnosed and being told there was no cure or sure treatment, I didn't understand why I couldn't find a balance as to what I could do, when or for how long. What was worse, was those around me didn't know or understand what I was going through. They wouldn't believe me when I hit my limit when just the day before or even earlier in the day I had tons of energy. Or there were times, especially when I was younger, that I could seemingly be fine and thinking I finally figured out a groove for myself, only to wake up one day and not be able to do anything for a week without extreme pain and fatigue.

Then one day, I was told about the "Spoon Theory". I forget who told me exactly, but I think it was one of my doctors' assistants. She told me of this story a woman shared with her friends to explain this idea of limited energy, using spoons as a unity of energy.

To read her full story:

The Spoon Theory

by Christine Miserandino

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

To summarize, this woman was out with her friend one day when her friend ask her what it was like to live with her invisible chronic illness. Being that they were in a restaurant at the time, she looked around, grabbed 12 spoons and told her friend each spoon represented a unit of energy. She only gets 12 a day and if she borrows from the next day, she will have less to work with the following day. Then she explained to her friend how each activity cost her a certain amount of spoons and how she had to remember about her illness and make choices about what she would do each day so as not to over use her spoons or she may not make it through the day. It was such an eye-opening experience and analogy for this friend, the woman knew she was on to something and started sharing her story to help others with chronic illness and their friends and family understand the challenges we are faced with every day of our lives.

Here's an example of what this looks like:

People with different illnesses or to varying degrees start each day with a particular number of spoons. Whatever that number is for them, that's what they have to work with.

For me, I should probably be operating on maybe 15 spoons a day. But, my life demands that I use a minimum of 35. So that simple math shows that I do more than I'm supposed to and why I'm in such a deficit. Doing more than I should and pushing myself to do more than I'm truly capable is probably what has put me in this over-stressed position that I find myself fighting for my life. So when people get frustrated with me for not doing more, I try to explain it like this. They don't always get it, but it is the way I have to work my life. I have to make choices every day that most people don't have to make just to try and keep up. As much as I liked to think of myself as Super Woman, I am not and I cannot do it all.

So when I say I'm all out of spoons, I can't participate in that today, this is what I mean. Or if I ask to borrow spoons, which really I can't, I'm referring to spoons as a unit of measurement for usable energy.

Here is another example using batteries:

Fibro Doesn't Kill

I gotta say, I am pretty shocked and amazed by how many views my first post got. Even more, I am blessed and thankful to be loved by so many more than I realized.

Some what expected, was some of the reactions and feedback I got. A little sad that those I had hoped would read it and have a better understanding of what I am going through, haven't seen it yet or care enough to look at it. The emotions and hurt I feel for that, I guess, is another day's topic. However, I did have a couple people care enough to, not only read it, but reached out to me for clarification.

See, when you look up Fibromyalgia as these friends did, you'll see that though Fibro is chronic, lasting ones entire life and has no cure, Fibro doesn't kill. So I was asked, what's really going on? Well, what you may not know, as these friends didn't know and understand, is that Fibro often comes with other symptoms and complications due to it's attack on the whole body and immune system. If you were to see my medical records, you'd see my complete list of diagnoses;

• Fibromyalgia 
• PCOS (Poly Cystic Ovarian Syndrome)
• IBS (Irritable Bowel Syndrome)
• Vitamin D deficiency
• Pre-diabetes 
• Sleep Apnea
• ADD (Attention Deficit Disorder)
• Depression
• Anxiety
• ARFID (Avoidance Restrictive Food Intake Disorder)
• and now being monitored for possible High Blood Pressure

Each one complicates another and together, compounded by stress, puts such a strain on my body, that I am in constant battle with myself. So if ever I was to have any or the perfect combination of  high pain, high blood pressure, and anything  out of whack, I can expect a stroke or heart attack.

Here is how I am fighting. For starters, I take all these prescriptions and supplements every day. For me, this is kind of the easy part. So long as everything is refilled on time and I don't miss any doses, this is a somewhat successful defense. But as I get older and my stress continues to rise, it's not enough. Which is why I have to add to it regular exercise (but not strenuous enough to put me in a flare) and eat better (so difficult to do with the eating disorder). It's ironic to me, however, that these actually cause me more stress and feels somewhat counterproductive. But my doctors insist that in the long run will be better for me and for my overall outcome. So in addition to all the meds, I am watching what I eat (as best I can with ARFID), exercising, seeing a therapist and looking for the best treatment for the eating disorder. 

This is my battle and what I need cheerleaders for. There is so much work and dedication to every aspect of my fight. A fight I did not think I could continue. But in recruiting help and putting myself out there, I am finding the strength. I am reminded that I am not only fighting for my life, but fighting to be here for my children. And because I AM worthy and loved, I deserve the opportunity to stick around a little longer. So I will fight and continue to put in the work, as best as I possibly can, because although Fibro Doesn't Kill, all of what comes with it Can.

Fighting For My Life

It has been seven months since my doctor gave me the results of my labs. I knew the moment she walked in that it wasn't good. She walked in with a solemn face, strange since I'd only ever seen her smile. She was normally a very optimistic person. But on this day, no smile, just a sense of sadness. She came in, pulled up her chair, sat down and looked me straight in the eyes and told me, "Audrey, you are far too young for me to be giving you such news." She preceded to lay out in front of me my lab results, a seven page report that predicted a fate of grim for me. I listened, half there and at the same time half not there. Most of the tests were off the charts. When she was done, before I could even ask what it all meant in the big picture, she looked up at me and solemnly said, "I'm sorry to say, but if you don't make some very drastic changes, NOW, you're looking at a fatal heart attack or stroke in twelve to eighteen months."

Not only was this poisonous pill already so difficult to swallow, but I had already fought so hard. Taken medicines that destroyed parts of me that I loved, tried treatments I had forever been fearful of, but tried in the slim chance they could make a difference. I went on a diet that was supposed to help, but ultimately put my gall bladder in distress and later shut down completely. I had procedures and surgeries that left me in even more pain. 

I already felt like I had already been to hell and back and now I was being asked to fight to get through it all again. "NO! No, that's it! I've had enough!...I have no more fight in me." It of course saddened her as I left her office in tears.

After living so long in so much pain and going through so much, it honestly didn't bother me to know my end was near. In fact, it was somewhat of a relief. Even so, it was very difficult to tell the ones I love. Some still refuse to believe it, a few begged me to fight. But no matter how deep within myself I tried to find the strength, I just couldn't.

And so, I started making plans of sorts for when I am gone, getting things in order for my family to make the transition easier. I made all the appointments needed for each of the kids needs, so their therapies and such would be established before I go and all such tedious things.

Fast forward through the new year and our world was struck with Covid-19 pandemic. In our home so far, so good, no one in my family has got it. But it brought with it an additional challenge or fight. I was now looking at instead of getting about a year, if I were to contract the virus, I would not be capable of fighting and I could be gone in a matter of weeks or less.

This stark realization brought on a whole other slew of emotions and fears. Plus, now, the best way to combat the virus was to self quarantine so as to limit my chances of getting it. I didn't think it would be that big of a deal since I spend most of my life home bound anyway. But it has turned out to be much harder than expected. It is right in my face how much my family still needs me.

So despite my initial intentions, I am waging war on the stress and everything that caused my labs to be out of control. I am taking control of my health and my happiness so that I can be here to see my children graduate from college, get married and hopefully get to meet my grandchildren.

Though I have started contacting friends and family to share what is going on, it is just way too hard. Especially, knowing in some cases I'm saying good-bye because life is such that we just don't get to talk often at all. So when my therapist and I started talking about how journaling would help me get through it all as well as help document my progress, I figured blogging it would help me and get to share with my loved ones as well.

I'm not looking for any pity or sorrow. I want to try my best, through all the pain and the tough times, to celebrate life and all the blessings I have been given. And I invite you to be my cheerleaders. I'm going to have many difficult days, but with your help and support I pray I will have fewer and fewer difficult days. Especially for those who truly love and care about me, here is where you will find updates. Please only comment positive and encouraging words, for I most certainly don't have room for negativity.